Cushing's Gear

I've ordered myself two fun shirts (Yes, I splurged!) and am REALLY hoping they make it here in time for my trip!  I can just see wearing these to my endocrinologist and MRI appointments and the laughter that will ensue! 

Please consider supporting a good cause, as the funds from this shop support the www.cushings-help.com family of websites.  The main page:  http://www.cafepress.com/sk/zebraesque

http://www.cafepress.com/mf/70268924/does-my-pituitary_plus-size
And this one too:

http://www.cafepress.com/mf/70271826/you-are-right_plus-size

Come on, mail! 

More test results!

I now have a 24hr urine that came back with a 17 ohs (kind of what your body breaks cortisol down into) at 9.3 in a range that goes to 6, I have two 10hr urinary free cortisols that are almost have the daily norm (for what should be THE LOWEST point of the 24hr day) and also of diagnostic levels, and today I just got results for another 24hr urinary free cortisol that was 90.8 in a "normal" range of 4-50.  YAY FOR BAD TESTS!!! 

The other good news is that NORD has now paid for my airfare, my hotel, and my MRI and Dr. F appointment are all set up.  In just under a month, I am expecting to have a GREAT trip with my husband (first kid-less trip together in 7 years), and hopefully a diagnosis!

God is good!

Cyclical Cushing's

I appear to have the cyclical form of Cushing's Disease (discussed in the second article), which means my body cycles from normal cortisol production, to overproduction, to underproduction, sometimes randomly, sometimes in a pattern.  Looking back I've had some definite "remission" periods, as well as different cycling patterns.  Currently my pattern is pretty close to two weeks high, two weeks low.  Of course lots of other factors change how I feel (the temperature, stress levels, activity, and this darned cold, for example!) so I can never really gage how I am going to feel or what I will be able to do on any given day.  It also makes diagnosis and testing that much more complicated and difficult.  Because my test results also show the varying ranges.  I've had low cortisol tests, lots of normal tests, and a handful of abnormally high tests.  The latest one was a doosy! 

It is becoming obvious following much testing that I in fact have Cushing's disease (there was a high suspicion to begin with due to my plethora of Cushing's-specific symptoms, especially at such a young age), but I still have to accumulate a sufficient quantity of biochemical proof (ie, lab tests) before a neurosurgeon will preform the delicate surgery to remove microscopic tumors from such a vital glad that happens to sit right smack dab between the carotids!  I'm at least half way there on the necessary lab results...maybe much closer (still waiting on 3 tests and resuming testing again perhaps tonight or tomorrow). 

http://www.eje-online.org/content/157/3/245.full

Why is diagnosis difficult and slow? Why do you have to do so many tests?

For those who ask why diagnosis is taking so long and why I have to do so much testing:  

This article explains why hard it is to diagnose Cushing's: there is no one good test...all produce both false positives and false negatives, and thus you have to get multiple "high" test results in more than one area (and the higher the better!).  Each person's own body seems to show highs in certain tests and not in others as well.  For instance, I've had 2 high serum results, 1 high 24hr urinary free cortisol, and a second high 24hr urine 17 ohc level, but I have yet to get a high salivary result!

 

http://www.healio.com/endocrinology/adrenal/news/print/endocrine-today/%7B6224334E-508C-4B90-A1F1-D1D8CCD9E68D%7D/The-difficulties-of-Cushings-syndrome

Getting close to my official diagnosis!

I've had some testing come back and one was a really good high!  My 17ohc came back at 9.3 mg/24hr when the range is 2-6.  Still waiting for three more tests results.  It is SO HARD waiting.  So far it has been a 4 week wait on results!  I want to test more right now (starting a high cycle again) but am a little worried this residual cold might make them a waste of time and money.  If I do test, it'll be another month before I know, sadly.

The other good news is that Dr. F reviewed last year's MRI and he agrees with the neuro-radiologist.  He sees 1-2 tumors, says that I need my MRI repeated, and that the new one should be read by a neurosurgeon.  BIG NEWS!  He also sent me the order for it. 

Sooooo, Britt and I are planning a trip to the LA area for mid-September to get my repeat MRI.  (An MRI center there has the best rates on these specialized MRI's to the point that the difference in travel costs still saves thousands!)  Since we'll be there, I'll also be hitting two birds with one stone and have scheduled an appointment with Dr. F.  I'm *hoping* I'll have enough testing completed for an official diagnosis by that time, so the appointment can be spent looking over the new MRI and discussing my neurosurgeon options.  Actually, I'm hoping to discuss that either way!  Because the recovery from surgery and this disease is so long and difficult, I want Britton to be there to ask any questions he might have and hear things first-hand. 

Here's to hoping for a diagnosis soon!  PROGRESS!!!

Reading an MRI

A friend's neuro-radiologist read last year's MRI for me as a favor.  AMAZING, huh?  They're friends and apparently he's awesome like that.  Alfred apparently got a bad rap, and probably nothing more than an annoying polyp.  But, he says my MRI is anything but normal with "suspicious" areas, "abnormal dynamic uptake" (meaning the contrast dye wasn't absorbed in a "normal" fashion), and some micro-adenomas that he even used arrows on the photos to indicate so someone like me can know what he's talking about.  He suggests I repeat the MRI (which again can't be done locally) and to have a neurosurgeon read it.

They are tiny small, but Cushing's Disease is often caused by tiny little tumors no larger than a pencil-tip. Some 50% of proven Cushing's tumors aren't seen on MRI, so the fact that we now have a "target" is great!  A repeat MRI and more biochemical "proof" they are problematic (ie, lots and lots of lab tests) and I can get an official diagnosis and move forward to surgery.

Here are the five pictures he sent back with his comments about them:

 

 

The arrows indicate the hypo enhancing spots on the dynamics (first two pictures).  The [third] picture is a spot that he said is “very concerning.”  Then there is a post-enhanced hypo-enhancing spot where it doesn’t belong (ie, there is an area that didn't absorb the dye like it should, which is common with these type of tumors).  The side view shows what could be tumor, but it could also be a juncture spot. 

I made the pictures with arrows larger since they turned out pretty small on here, so it is hard to see.  To start, look right under the center of the brain for the white blob (from the side) or arch(from the back) that is the pituitary, surrounded by black arteries, etc.  That little blob/arch is where you'll find the arrows.

Cushings Disease - Rare Disease Quick Facts

Click on the link above for some brief and simplified information about Cushing's Disease, it's symptoms, testing, and treatment.